Statins and ALS-Like Syndrome
Share Statin Experiences July 30, 2007
Several months ago we heard from Duane Graveline, MD, (aka “Spacedoc”) that people had been reporting cases of ALS (Lou Gehrig’s Disease) associated with statin-type cholesterol-lowering drugs. Dr. Graveline has had personal experience with Lipitor and TGA (transient global amnesia) and has written about it in his books, “Statin Drugs Side Effects” and “Lipitor, Thief of Memory.” The information is at www.spacedoc.net. In May Dr. Graveline told us that he had received 30 statin-associated ALS case reports.
Although we were aware of muscle problems as well as nerve issues (peripheral neuropathy) associated with statin-type drugs, we had not heard of ALS cases linked to these medications. Then we received an email from a reader of our syndicated newspaper column:
“I read with interest today's letter from a Lipitor taker. I believe Lipitor triggered my ALS, but had a hard time convincing anyone until this World Health Organization report came out:”
“Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase.”
Edwards IR, Star K, Kiuru A.
Drug Safety 2007;30(6):515-525.
If you would like to read the abstract, here is the URL for PubMed. You will have to put these terms into the search box: statins neuromuscular amyotrophic
http://www.ncbi.nlm.nih.gov/sites/entrez
The Wall Street Journal has also written about this research. You can find an article by Avery Johnson on the first page of the July 3, 2007 edition:
http://online.wsj.com/article/SB118342971456956235.html
If you have an experience you would like to report about statins in general or an ALS-like syndrome in particular, please write about it here. We will pass on your case report to the FDA.
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Readers Report Statin Experiences
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I read your "Statins--ALS link is controversial." However, I could not find any related information in your website, except the usual memory loss and muscle loss and pain, but no mention of ALS..
I have been taking statins for 15 years. First the muscles in my legs--that let me get up from a sitting position completely deteriorated. Then I suffered from weakness in other muscles, arm and leg plus terrible pain in my leg muscles especially at night. Walking seemed to help control the pain.
I would appreciate some help finding an article to support this connection. My doctors have not admitted that there is any loss of memory or cognitive thinking or leg pain due to the statins because they say there is no sign of it on the blood test they give me once a year.
I have developed a tremor inside--not visible that is getting worse each year.
Posted by: PR from San Antonio | July 30, 2007 11:42 PM
I read your column in today's newspaper regarding ALS and statins. My mother died a year ago with ALS-type syndrome and she had been taking statins for several years. I hope the FDA researchers will look into this. Thank you.
Posted by: Foxfire Village, NC | July 30, 2007 11:44 PM
I was on statins for close to a year when my achilles tendons started aching. I thought it was from not stretching enough before my 2 mile treadmill walk. My doctor sent me for tests-all negative. This myalgia is news to me but I believe it was a reaction to Lipitor.
Posted by: Dan Mc Cabe | July 31, 2007 8:09 AM
MY PROBLEM WITH LIPITOR WAS FEELING LIKE I WAS WALKING ON ROCKS MY FEET HURT TO THE POINT OF NOT BEING ABLE TO WALK. WHEN TAKEN OFF THE LIPITOR THE PROBLEMS WENT AWAY IMMEDIATLEY. I TRIED DIFFERENT SHOES, SOCKS, FOOD EVERYTHING, BUT NOTHING HELPED UNTIL THE LIPITOR WAS STOPPED.
Posted by: RALPH TYSON JR. | July 31, 2007 8:39 AM
I was taking provacol for about 5 yrs.i now have about 40% use of my right hand.i also have lost muscle tone in the hand.i also get spasms in my fingers.i went to 2 neoroligists who found nerve damage, but no cause for the damage. The weakness gets worse when my hand gets cold. Ihave a hard time writing and performing other small tasks. I don,t know what to do next.
Posted by: john sheerin | July 31, 2007 8:48 AM
I had been taking Lipitor for about 8 years with no problems, then this year I developed a painful muscle soreness in my leg. My orthopedic doctor could only find some arthritis in my hip and I received a CT guided cortisone shot in the hip which didn't help. I then went to physical therapy for several weeks, which also didn't help. Another doctor suggested I stop taking the Lipitor and within two weeks, the pain was gone. I have been taking generic Pravachol for about a week and my doctor and I will monitor if or when my muscle soreness comes back.
Posted by: B. Pfeiffer | July 31, 2007 8:54 AM
I have been taken statins for at least 9 years changing from Lipitor to all others. I have developed muscle weekness in my legs and have lost all the flesh in that area. Now I am on Niacin 500 mg. 3 a day and wondering if this is still causing the problems in my legs? By the end of the day my legs ache terribley. Can I get an answer as to what to do next?
Posted by: Lorraine M. Dudleu | July 31, 2007 9:29 AM
I read your column in today's newspaper regarding studies linking Lipitor to disease. My father suffered a heart attack 12 years ago and was treated with Lipitor after recovery. My father used Lipitor for the past 8 years.
My father had lost muscle tone, strength, pain in his legs, peripheral vision, memory confusion and was just diagnosed with alzheimers. Within those 8 years my father health was slowly declining. Concerns about Lipitor were brought to his physician and he was taken off of it. I believe Lipior had something to do with my fathers health. I hope that the FDA looks in to this matter. Thank you.
Posted by: Phyllis | July 31, 2007 9:35 AM
Took pravachol @ doctor's suggestion for high cholesterol in 2004. I was 42 years old, the mother of 3 and a person who exercised 4/5 x's per week (running, walking and weights).
After a period of just nine months on this drug my life and health were virtually destroyed. I sincerely & rapidly felt as though I had aged 20 years. I could not stay awake for more than 3 hours at a time and slept the whole time my kids were at school and in the evening before bedtime too. Upon waking in the morning my feet would "buckle" - the oddest sensation, and I would have trouble walking/hobbling on them for at least 15 minutes. Going up my home stairs (or any set of stairs) became a feat as my legs felt too weak to lift...I stopped running & weight-lifting completely - and though I still walked my kids back & forth to school most days ( 2 mile round trip) - after the walk I would collapse on a chair and feel like I had just run a marathon. The exhaustion I felt in my formerly very strong legs was devastating.
In the spring of 2004 I came down with the flu and stopped taking the medication for a week - when I suddenly realized I felt better with the muscle-aches involved in having the flu than I did on an every day basis with Pravachol - I knew something was very wrong. My doctor was not especially interested in my symptoms (initially) and I kept thinking I would adjust. He also told me if I didn't take the medication - with my family history and my cholesterol level I was due for a DEFINITE heart attack - pretty strong persuasion tactics. It should be noted I was taking half the dosage he had prescribed in an effort to alleviate my symptoms - I cannot even imagine what might have happened had I complied with his instructions fully!
In conversations with my children's pediatrician and my husband's chiropractor (who were also taking this medication) I found out they were both experiencing similar muscle reactions/weakness/achiness that was interfereing with their swimming and cycling routines respectively.
At this point I found the idea of my reaction as a "rare" one to be suspect. I saw my doctor & gave him an explicit letter detailing my symptoms, the destruction of my quality of life on this drug, my fatigue and my inability to continue with a long-established exercise routine while taking this medication. I asked him to please report my symptoms. He told me I could never be on any statin drug again and frankly, though still insisting my symptoms were unusual - did not seem the least surprised by them. This past year my 75 year old mom began to experience the same symptoms (after being on Lipitor for 5 years) inclusive of a fever and muscle pain so severe she woke up in the night crying in agony. She is also an avid daily walker of 2-3 miles.
I find your column to be a valuable & balanced forum/source of information. I hate to be cynical - but I feel like we are/were all test subjects in a statin drug experiment and it is failing - though no one wants to accept defeat or admit culpability. I also believe that unless a patient insists - doctors are not reporting reactions as they should be. Thanks for this opportunity to tell my story...Rebecca McCabe
Posted by: rebecca mccabe | July 31, 2007 9:49 AM
I am a diabetic educator & most of my patients have been on a stinin for high cholesterol - my husband is a pharmacist, also - Any patient on a statin should supplement with CoQ10 10-20 mcg a day and their muscle weakness will improve or dissapate ! It is a known fact that statins deplete the body of this antioxident, and I just don't understand why patients are not being told to take CoQ10 w/ statins, redrice yeast, etc. 9 out of 10 of my patients who reported weakness got relief in a few DAYS!
Posted by: SHERRI | July 31, 2007 10:10 AM
I was on Simvastatin (20mg) and I had muscle pain and could not walk. The pain was in my legs, arms and all over my body. I had constipation, headache, tingling in my feet and legs and a feeling of just not wanting to do anything. My doctor told me to stop the pill and that I would be better in a week. I am still the same and it has been 2 full weeks. Even the sheets on the bed hurt on my legs. I also experienced leg cramps and a violent shaking after I had the cramp.
Thank you for letting me tell you about this.
Dorene B. Kielich (age 74)
Posted by: Dorene B. Kielich | July 31, 2007 10:36 AM
July 31, 2007.
I had been taking Zocor for at least a year and was recently taken off of it. On July 17, I was diagnosed with ALS.
Les Bennett
Posted by: Les Bennett | July 31, 2007 10:41 AM
I have been repeatedly prescribed statins by my Dr. After a significant amount of time on the first one I realized that I had developed increasingly severe pain and weakness in both my leg and arm muscles...there was no sign of a problem in my liver function tests but I was annually diagnosed with blood in my urine without any other symptoms of a kidney infection.
I made a personal decision to stop taking the statin and the weakness, pain and the blood in the urine disappeared. Determined to lower my cholesterol my Dr. has since convinced me to try two additional statins including Zetia and I have had the same results. However, now I know what to look for and I have not endured the side effects for months on end. I am currently looking for natural ways to lower my cholesterol and I do not intend to take statins again.
[Editor's note: Zetia is not a statin]
Posted by: Erika Rener | July 31, 2007 10:46 AM
My initial posting was so overally long I did not go into every detail. However, in response to the posting by the pharmacist's wife. Sherri - I did take CoQ 10 for over two months. It had no affect whatsoever, positve or negative on my symptoms. I was very encouraged by what I had read about CoQ10 and I was truly hoping and expecting it to help -this is not to say it would not work for others and may be worth trying. Rebecca McCabe
Posted by: rebecca mccabe | July 31, 2007 10:59 AM
I was astonished when I read the article today in the newspaper. It is so unusual to read anything about ALS since it is such a rare disease. My father suffered the effects of it for 14 months before dying at the age of 68. He took Zocor for many years and had trouble with his legs while on it. His doctor refused to believe that the drug could interfere with his walking and cause him pain. He was finally switched to Zetia but never fully recovered from the pain in his knees and legs. He began to have other symptoms and then was diagnosed with ALS. I also have issues with cholestrol and I now know that I will never allow a doctor to give me any statin drugs if there is any chance of this link.
Posted by: B. Dawson | July 31, 2007 11:18 AM
I have been taking Lipitor for about 4 years and have noticed a general weakening of my muscles and tiredness gradually increasing over that time. Recently I moved and was totally exhausted by the move. I have arthritis as well but it did not really interfere with my life but suddenly I could barely get out of bed, getting on and off the toilet was a desperate struggle, and sleeping more than 2 hours until the pain and muscle cramps took over was impossible.
My doctor insisted it was not Lipitor, prescribed prexige which helped the pain the first 2 days but then later only brought the pain level to a 4 and left me chained to the toilet.
The leg cramps during the night were unbelievably painful and the small of my back felt the same as when I was in labour.
I talked to a herbalist who cautioned me about lipitor so I stopped taking it and within 5 days had only 1 episode of leg cramps and none since then. I have used a herbal ointment called Tei-Fu on my leg pain (like shin splints on the front with one especially burning circle on my left lower leg, and a hard ball in my left calf as if I hadn't stretched enough but it usually hurts too much to try and do stretching exercises) with success. I have to use the ointment 5-6 times a day and initially twice during the night but the last 4 nights I have slept about 5 hours straight before the discomfort (not the same level of pain that I had) wakes me up. The pain now is not so much in my knee (which is still stiff) as it is in the shin and the calf. The tiredness remains - it's a constant push to make myself get up and go.
2 years ago I was in a walking club and could easily walk 15-18K every Sunday morning. Now sightseeing in Niagara on the Lake for 10 blocks required 3 sit downs to ease the pain.
Posted by: Orma Bleeks | July 31, 2007 11:26 AM
History; 67y, American male, Italian ext., tendency to overweight. Diagnosed with 260 chol about 30 years ago. Took various, many statin drugs all caused significant joint and muscle pain which I allowed to go on too long always blaiming cronic back pain, arthritis etc.
Then I noticed I could no longer participate in my much loved sport of bike riding 100 miles /wk. Even though I wanted to and tried to. Then I looked closely at my once big, powerful and beautiful legs and saw they were shrinking. This was ~ 5 years ago and they are still that way. Any physacal activity is very difficult. I stopped the drugs ~2years ago. The pain is gone but so are the muscles.
I am greatful for our medical and pharma. industrees they have done great things for us as a whole, but something is wrong here. I am now depending on my mother to help me. She was diagnosed with high chol. about 20 years ago (260) too late for the statin drug treatments. She is 98 years old, On NO medication. You go girl.
Posted by: Ben Caviglia | July 31, 2007 11:32 AM
After taking Zocor for 6mos
10yrs ago I developed disabling Rheum. Arthritis, plus many other muscular skeletal disorders.
R patella cyst req. surgery.
Fibromyalgia
Ankylosing Spondylitis
Pes Anserine Bursitis, bilat.
Plantar Fasciitis
Bilat.Torn Rotator Cuffs, req, surgery.
I am now permanently disabled
with Advanced Degenerative Osteoarthritis.
Are you listening FDA? Or is the Drug lobby just too powerful. Feel free to contact me, there is a lot more !!!
Lilian L Finlay RN
Posted by: Lilian L Finlay RN | July 31, 2007 11:56 AM
THANK YOU so much for bringing this subject to attention! I was on Lipitor (and CoQ10) for more than a year before I started to get muscle weaknesses - arms and legs! I couldn't go up and down stairs, couldn't get up and down from chairs (or the toilet). I told the doctor I was going to stop the Lipitor because I'd be more likely to die from falling and fracturing my hip than from a high LDL cholesterol (and sooner, too).
There's been some other medications I had to stop also - any that even mention a side effect of muscle weakness! Why do doctors ignore our distress? Now, if this is true, about ALS, that's terrible!
Please let the FDA know what's going on because our local physicians apparently are NOT!
Posted by: Heidi P. | July 31, 2007 12:04 PM
I have had problems with Lipitor and vytorin. I had severe muscle and nerve pain. My doctor said he didn't believe it was from vytorin. I stopped medication and slowly got beter; it took 7 weeks.
Posted by: Sandy Hynes | July 31, 2007 12:06 PM
Started taking Zocar about 6 months ago. Gradually noticed increasing leg muscle hip and back pain. I also noticed increasing fatigue and loss of stamina. My gym workout regimen made me aware of an ever increasing level of physical difficulty in doing the same exercises I had performed for more than a year previously. Going to the supermarket with my wife gradually became more difficult, as an ever increasing discomfort in standing and walking on a concrete floor caused a steady decline in my ability to do so. After discussing these symptoms with my doctor I discontinued taking Zocor. The symptoms that I described began to disipate and have almost completely disapeared. The doctor suggested trying another statin drug, but after this experience I don't think I will.
Posted by: Frederick M. George | July 31, 2007 12:07 PM
Although I have had no heart problems, I have bad heart genes - family history. My doctor put me on Zocor to reduce my cholesterol which wasn't that high but this was considered a preventative for heart related problems. When my legs had cramps at night, yellowing of the whites in my eyes and lots of muscle aches in my legs, I took myself off of it for several months. The symptoms went away.
I went back on Zocor and after several months, my cholesterol went up again. My doctor wanted to double the Zocor but I refused. My pain all over was so intense that I was close to tears and could hardly climb stairs. Once again I noticed yellowing in my eyes. That was several weeks ago. I still have leg cramps and bad muscle pains in my thighs. I realize that I need to lower my cholesterol bud don't want the statins again.
Posted by: Sara Lynn Pyatte | July 31, 2007 12:42 PM
I too was given Lipitor and started showing high cpk levels. After a few years they stopped the lipitor and gave me zetia with same results. The pain from muscles cramps continued and I developed a foot drop. Now I have been told I have ALS. We need to know if statins are the reason for the increase of people getting this disease.
Posted by: Eugene Wiitanen | July 31, 2007 1:11 PM
I started taking Vytorin June 15, 2007 and within a week my hands and feet were so sore I could hardly move them. My doctor took me off Vytorin. He advised going on Lipitor. I waited awhile to see if the symptoms would go away. They did but as soon as I started the Lipitor the symptoms came back. At times my hands are so sore I can't even open a water bottle. I have to move my feet around before I can walk because they are so sore when I step on them. Thenking you for your information and allowing me to inform you about my symptoms. I'm hoping I stopped soon enough so I don't have any problems down the line.
Posted by: Pat Martinson | July 31, 2007 3:18 PM
I forgot to mention that when I was having all those muscle pains and weaknesses, I also apparently developed carpal tunnel syndrome. I had surgery for my dominant hand and decided to wait with the other hand. Refusing to continue with the Lipitor and giving my body a chance to heal itself and get rid of the effects of the Lipitor worked and I never had to have surgery on my less dominant hand. Both hands are okay, but - did I relly need to have that surgery? Seems that maybe I did NOT!
Posted by: Heidi P. | July 31, 2007 4:07 PM
I have been taking statins for several years, I took Zocor first and then Lipitor. I am still taking Lipitor. About 2 1/2 years ago I started having tremors in my hands and terrible cramps in my legs. After seeing several doctors, I was diagnosed with ALS in March,2006. Thank you for writing about the possible link bewteen statins and ALS. I would like to have more information about the studies that were done.
Posted by: Michael Cherry | July 31, 2007 4:44 PM
My Mother passed away 5 years ago from ALS. She was put on Lipitor and started experiencing muscle weakness, falling, nerve damage, etc.
Initially she contacted her Physician to report the muscle weakness and he told her it could not possibly be from the Lipitor. He was very annoyed at my mother for even questioning him.
My mother was an educated person who had a friend with ALS and she did her research. To this day, we still believe the Lipitor had something to do with the ALS, as she was primarily a healthy person for her age (83y.o.) She diagnosed herself and when the official diagnosis came back, she basically gave up and stopped eating or drinking and lasted only 3 weeks after that.
The Physicians need to listen to their patients!!!!
Thanks for listening and please keep us updated on this development.
Posted by: Lorraine Heller | July 31, 2007 6:59 PM
I've been taking statins for at least 15 years. I was diagnosed with ALS in November of 2004, but symptoms went back to 2002. Dr Belsh (Robert Wood Johnson Medical Center) says my ALS is slow progressing. If you want more info, email me.
Posted by: Richard Hoppenstedt | July 31, 2007 7:38 PM
I began taking Lipitor about 5 years ago because of carotid artery plaque build-up. Within about 6 months I began tremendous joint pain. I could not move my arms. Had to have about 5 cortizoid shots to relieve it.
Within another month or two I developed severe plaque psoriasis which I still have to this day. It is so bad that I lose my finger and toe nails, have lesions all over me which bleed regularly. I also developed tremors and leg and foot cramps.
Needless to say, I insisted that I go off statins and nobody will ever convince me that this ALL occurred naturally at the same time without a trigger. I believe that statins damaged my immune system - put it into overdrive.
I still take Zocor 10 mg every third day along with Zetia. My opinion is that statin drugs are POISON but Doctors are so high on them that they consider them a miracle drug and insist on them. I predict that eventually statins will cause more problems than they are worth.
Posted by: Marilyn Barton | July 31, 2007 8:11 PM
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